Gulf War Veterans Study Recent Developments re Civilians with CFS/ME and XMRV Research: Why?

Gulf War Veterans Study Recent Developments re Civilians with CFS/ME and XMRV Research:  Why?

Unanswered Questions Continue For Ill Gulf War Veterans As They Do For Civilians With CFS/ME

Many have asked me why am I tracking this development over the past year since the first paper on XMRV was published.  Will since the very beginning(1991-1992) I connected with the Civilian Chronic Fatigue/ME groups I learned from them a lot!  We have had several of them come to hearings on Gulf War Illness and one attended a Veteran’s Affairs Research Advisory Committee on Gulf War Illness.  Since then we have had some of the CFS/ME Researchers present their findings to this same advisory committee including Dr Kerr.  We now have Dr Klimas also working with Gulf War Illness, Dr Barinuk doing research with gulf war illness, and in the past Dr Berg(hypercoagulation).

I have been exploring the big picture!  I also know we had veterans who were nondeployed that got ill and have had little attention paid to them and their struggles to get help and any compensation.  I have always felt we had multiple exposures and that this was possibly a snowball that grows to an avalanche.  Each exposure is important and a synergistic effect has not been disproven! 

Also we had Gulf War Veterans who are ill also with family members (healthy before the war) that got ill with CFS symptoms and we had gulf war veterans reporting that their children born after the war had attention disorders/autism.  I found it interesting at the OFFER conference in Salt Lake City that there were at least 8 family members of Gulf War Veterans out of an estimated 300 patients at their patient conference .

Gulf War veterans were put into the mix with our law that connected Chronic Fatigue, Fibromyalgia, IBS, and menstrual cycle problems for our female veterans.  Many Gulf War Veterans have been going to civilian doctors that have civilian Chronic Fatigue patients to try and find real help.

None of us have the answers yet.  But I do feel we need to push and have studies with each subset and Gulf War Veterans being one subset to be tested.  We need to find out how we are different and how we are alike in each diagnostic test.  For example immune system problems, autoimmune problems, autonomic nervous system dysregulation, and differences and similarities in our test results.  Dr Klimas and Baraniuk are two of many that could help us get more answers.

WE do not know for sure which exposure is significant for each veteran.  We do not know if there is a genetic suspectibility to one exposure versus another or how the exposures act synergistically.  We do not know if exposures to the vaccines or contamination from returning equipment impacted the nondeployed veterans or civilians that worked at the ports receiving our equipment as it returned like we did in 1991 or civilians that worked with the DOD who got ill.  WE do not know if any of the civilian sufferers had exposures to vaccines we got or equipment that was returned from the gulf.  We do not know if the civilians ill in Salt Lake City has any correlation to testing that was done at Dugway proving grounds.  We do not know if civilians in Nevada or elsewhere where chemical exposures or radiation exposures could be part of the mix in their illnesses.  We do not know the susceptibility to infectiousness.

These are the questions that keep me questioning and pushing me to continue to explore all the research.  In that quest I share the information I am finding in the civilian Chronic Fatigue Networks and other networks to include MS groups, MCS groups, Cancer groups, Atomic  and other exposed veteran groups, and so many others.  I do know we all need to network and push for answers.

It is a bad mark on this country when ill gulf war veterans have to keep the pressure on to get help.  Be it pushing for hearings, pushing for release of classified documents, to attending research advisory committee meetings, and then also having to go beg US Representatives and Senators to fund meaningful research through the DOD CDMRP and getting a very small amount each year!  The veterans continue to fight the VA to do the hard research and fund really strong research and the efforts to find biomarkers and treatment for gulf war veterans.  The announcement of their last response ( VA funded Gulf War Illness Research) to our needs has met with criticism and a loss of hope that they get it at all!  WE need the best and the brightest!  WE need it NOW.  WE do not need half steps.  It has been 1991 for the gulf war veterans who are desperately ill and wanting real answers and real help.  WE live in every state and overseas.  Our coalition forces are ill too!  We should leave no stone unturned and neither should we leave people ill and sufferring.  That means we need to consider our nondeployed that are ill and learn from other groups.  Whether you have MS, ALS, thyroid problems, cancers, autoimmune problems we veterans need to remember to not splinter and not support the big picture!

The same is happenning to the Chronic fatigue patients in civilian life.  Statistics from their site:  •Asthma: $10 billion economic losses year
•Asthma funding:$300 million a year
•ME/CFS: $20 billion economic losses year
•ME/CFS funding: $4 million a year
•AIDS – $2700  per person 
•Asthma – $300 per person
•Chronic Fatigue Syndrome – $4 per person

Very Very Similar to Gulf War illness research fight for funds.  I do believe we need some cost figures always highlighted at least one in four of gulf war veterans from 1990-91 affected, that is a big number especially if we have coalition forces counted,  then should we add? ill non deployed, plus ill DOD or Civilians directly connected to Gulf War 1990-91 health issues.  And that number continues to grow!  How much loss per veteran if they had been healthy and able to work?  How much impact to their local economies much less at state level?  How do we compare to research done on AIDS and other illnesses?

So below is report on abstracts from the international meeting that occurred just this past month on XMRV thanks to the CFS/ME patients and advocates. 
I await Readers’ comments and hope that each person that is reading responds with some type of comment.

  • XMRV International Workshop Abstracts Part I 

    Those Monkeys – Five Rhesus macaques were infected with XMRV; two of them were sacrificed quickly and the others several months later. Creating only low levels of antibodies, the immune system did not react strongly to the virus possibly because it was able to quickly remove the virus from the bloodstream. This apparently suggested to the investigators that the virus showed low infectivity and virulence, but low and behold when they opened the animals up, they were surprised to find that the virus had infected many organs and they were able to detect evidence of ongoing replication. Interestingly, the virus hung out in the lymphoid organs – which give it a clear pathway to the bloodstream. (Dr. Mikovits has suggested that the lymphoid organs could be a tissue reservoir for the virus). They found that XMRV was also replicating in all the sexual glands – which, of course, suggests that sexual transmission is a distinct possibility.

    XMRV is Different in the Prostate  – we’ve heard that different XMRV variants may exist in the blood and the prostate but this study suggested that the XMRV may be different within the prostate itself. This study found different forms of XMRV which, the authors speculated, could enhance XMRV’s ability to cause prostate cancer (if indeed it does that).

    XMRV Is Not Present in Prostate Cancer in the US – While several positive prostate cancer XMRV studies have occurred this fairly large John Hopkins study, which used immunohistochemistry, found zero evidence of XMRV in almost 200 samples…But…

    XMRV IS Present in Prostate Cancer in the US – a Baylor study found XMRV was present in 22% of 144 prostate cancer patients – so much for consistency at this stage of the game. Still a positive report should trump a negative one, all things considered. Two more US studies will alternately not find and find XMRV in prostate cancer patients.

    Hanson XMRV CFS Study Strongly Positive – This is the first study to use LnCap Cells (aka WPI) to culture at least some of the blood samples. Reports from the conference suggested that Dr. Hanson found polytropic MLV’s but no XMRV but her abstract stated her study was strongly XMRV positive with XMRV gag sequences showing up in just over half the CFS patients. The abstract ends “Our results corroborate those of Lombardi et al (Science paper)”! Dr. Hanson is the first recipient of an NIH grant to study XMRV in CFS patients and her extensive study to examine the immune factors and the effects of exercise on XMRV is projected to take at least a year.

    Yes, There is XMRV in the UK – This UK study with Dr. Mikovits in the lead and Dr. Ruscetti the senior author, states that ‘more sensitive’ methods to detect XMRV have been developed since the Science paper was published last October. The blood was collected in England and shipped to the National Cancer Institute in the US. They came right out and said it’s not about the methods – that the most important factor in the negative results in the type of patient studied a theory which seems to have gained some strength lately. The paper states  “Since the most important variable in detecting XMRV in CFS is patient selection” – an interesting statement, if there ever was one.

    They used five methods, the most prominent of which was culturing in the LnCap cells that Dr. Hanson used but they also used antibody tests and various kinds of PCR tests on different types of cells. The WPI has been working hard on the diagnostic end as they cited their new antibody tests and new primers that can detect both XMRV and polytropic MLV env sequences. They also showed, as did the Science paper, that cell free media from patients contained the virus (it was present in the blood outside of the cells) and that the virus could infect other cells once they were placed in it; no wonder Dr. Ruscetti reportedly claimed his work on the diagnostic end was over and he was moving onto the next stage of research. This was a very strong study – with multiple overlapping tests – just as occurred in the original Science study.

    A New Method For Detecting XMRV
    –  Dr. Ruscetti has developed ‘DERSE’ cells that can quickly and sensitively detect the presence of XMRV – another diagnostic improvement in a Workshop that was chock full of them.

    ‘High Throughput’ Antibody Tests Available
    – want to test large quantities of blood for antibodies to XMRV? The authors think they can now do that.

    Blood Working Group Has Been ‘Working’ – Not very fast but they are working. They are now very clear that they have a good test to detect XMRV in spiked vs unspiked whole blood, PBMC’s and plasma. Next step is looking for XMRV in people!

 

  • XMRV International Workshop Abstracts Part II:

    German Researcher Draws Blanks Again – Norbert Bannert is not having an easy time with XMRV. First he tried to find it in prostate cancer and failed and now he’s to find it in ME/CFS and failed. Unlike other researchers he activated the PBMC’s he sampled and then cultured them in order to boost the viral presence but he used a different process than the WPI and Dr. Hansen did. Then he tried to transfer the virus to the LnCap cells the WPI does use in at least some samples but to no avail. He did show, though, that XMRV is infectious; that is he was able to produce the virus from a cell line and showed that it could infect cells. His particular population – a small group of 39 CFS patients – was negative, as were his healthy controls and a group of MS patients.
    Swedish Study Comes Up Empty – Dr. Blomberg and his ‘Swedish XMRV Study Group’ – used quantitative PCR – the same type of PCR Dr. Singh favors, to look for XMRV. Dr. Blomberg used the same LnCap cells the WPI recommends to culture the virus for five days for the same period of time the WPI recommends. Blomberg found no XMRV in 50 people with ME/CFS, 400 prostate cancer samples or 200 controls using what he called his ‘novel’ PCR methods. He did get a few weakly positive (or ‘uncertain’) samples from ME/CFS patients. We can see from both these studies and the Mikovits and Hansen studies that as time goes on studies are getting more complex and are starting to hue more towards using the WPI’s techniques. Dr. Singh is currently engaged in an XMRV study in Salt Lake City which is using LnCap cells as well.

    XMRV Blood Working Group is Halfway There – Key Problem Identified? Phase II of the project, which compared different labs ability to find XMRV in WPI identified positive patients is complete! One thing they looked was whether the 2-4 day delay in processing that is common in many labs affects a labs ability to find the virus. Dr. Mikovits’ stated that blood preparation techniques are important and it brings to mind Dr. Singh’s painstaking attention to this factor in her study. In Phase III they will determine the best assay using blinded tests and in phase IV they will look at 300 samples from the Western United States. They will be done by the end of the year.

    Finding XMRV’s Tissue Reservoir – Dr. Ruscetti stated that the results from the Science paper suggest that XMRV is not very active in T and B cells in the peripheral blood – the main players in the adaptive immune response. His study looked further into the immune system and found that it can infect two major players in the innate immune response – monocytes/macrophages and antigen presenting dendritic cells. Interestingly, while XMRV appears to be able to infect and replicate in these cells, MLV’s cannot – the reason being that they cannot infect ‘non-dividing cells’. Ruscetti is currently investigating whether XMRV is infecting a small number of macrophages/dendritic cells that are dividing.

    XMRV and the immune System – MLV’s have a history of producing cancer and neurological disorders in rodents and other mammals but what about those immunologically disturbed ME/CFS patients? Does XMRV do anything to disturb the immune system? This study, which looked at how the gene expression in prostate cells changes when they become infected with the virus, found a good deal of abnormal immune and other gene expression. The authors stated their findings suggest the virus could have a ‘profound effect’ on fundamental cellular physiology and inflammation.

    XMRV and EBV Team Up?a Spanish team found that XMRV in a significant percentage of EBV transformed (infected?) Cell Lines from a small group of ME/CFS patients and healthy controls suggested that EBV infected B cells could be a tissue reservoir for the virus.

    XMRV Present in Leukemia and Mantle Cell Lymphoma Cells
    – Dr. Mikovits and Dr. Ruscetti and others found XMRV in leukemia and Mantle Cell Lymphoma cells from two patients. The abstract suggested that the development of these cancers ‘coincides’ with three factors; the growth of the gamma delta T-cells, XMRV infection and a ‘distinct inflammatory profile’. They appear to suggest that these factors could place patients at risk for the development of these cancers. (Interestingly, neither EBV, nor HHV-6 or CMV appeared to coincide with cancer development). They also noted that antivirals can help in HIV derived cancers and that AZT and Raltegravir stopped and significantly reduced previously rising lymphocyte counts in one XMRV infected ME/CFS patient with cancer. This suggests antiretrovirals may be helpful in this set of  ME/CFS cancer patients.

    Dr. Cheney ‘s Study Dr. Cheney’s study probably did little to answer any of the more pressing questions about XMRV because the tests were not done at an independent lab but it should prove quite valuable when the WPI’s XMRV test is validated. Some of his stats were alarming. Dr. Cheney has said he probably sees a sicker population and judging from this sample he probably is; the average duration was almost 20 years! He found XMRV in almost 75% of them. His patients had a very high incidence of CFS or CFS-like illnesses in their family (45%); 48% had cancer in their families or themselves and 28% had autoimmune diseases in the family. (One wonders what the norms are.) The most startling fact was 50% XMRV positivity in non-CFS family members. If Dr. Cheney is right this virus is spreading in families.

    XMRV Positivity Rates at VIP Dx – In the 7 months between November and May VIP Dx Labs received 712 samples (about 100/month) from 46 of the 50 states in the US and about 50 from Europe and the UK. Of those only 35% tested positive for XMRV. The discrepancy between Dr. Cheney’s 75% and VIP Dx’s 35% is surely one reason why Dr. Mikovits stated the type of patient being tested is a major factor in the positive rates for a test. Of course, Dr. Cheney with his 20 year ME/CFS patients was undoubtedly testing a severe subset.

Children with XMRV – the Ruscetti/Mikovits juggernaut rolled on with their (fourth?) abstract, this time indicating that XMRV was present in no less that 82% of 17 autistic children (!) The finding that 16 of the 17 families with autism spectrum disorder, CFS, FM, Lupus, etc. had at least one member infected with XMRV suggested that it may run in these diseases, although.



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12 Responses to "Gulf War Veterans Study Recent Developments re Civilians with CFS/ME and XMRV Research: Why?"

  1. megascotties1  November 20, 2010 at 10:59 pm

    I have CFS/FM. Was stationed at the Pentagon 1989-1993. Got really sick in late 1992 and early 1993 and was diagnosed with CFS/FM by the military doctors in Washington, D.C. I was never deployed, but doctors mentioned it looked like Gulf War Illness. Wondering HOW MANY PENTAGON EMPLOYEES, like me, became sick with these two diseases while stationed there. Please respond.

  2. julia rachel  November 12, 2010 at 5:04 pm

    Your reporting of this issue is infinitely more important than realized in these evolving times with our illness. Thank you for never ceasing fire for our lives. I hope to climb The Hill with a vengeance and my son BLake by my side. 24 months after beginning treatment, he is ready to speak. Godspeed. Julia Rachel

  3. Sheridan Collins  September 28, 2010 at 1:43 am

    I was at Lake Tahoe the first time I could not work anymore. It was 1985. I took my daughters there from Sacramento where I had been working on the Light Rail Project. The 7up bottling plant was suing the Light Rail Project because the creosoted ties were stinking up their plant. That was a good one – poison going after poison. We had just come out of Alaska because I could not work 80-100 hour weeks anymore with 2 small children. It was 110 degrees every day in Sacramento. We thought 60 degrees was sweltering in Alaska. I was designing the stockyard. When the treated ties came in I went right over. I took the girls down to Puerto Villarta for a month because the doctors kept telling me I was “just tired” and “a mother can’t expect to be doing all that engineering work.” What??? I got worse there because every employee in the hotel had their own personal spray gun full of poison for insects. I ended up at Paul Cheney’s clinic. That is where the first IQ tests were done by Dr. Shiela Bastien of UC Berkeley.

    I remain extremely heat intolerant. I would rather be in 20 below zero (shortly) than 80 degrees. Someone better than me is going to be able to put together a reasonable hypothesis for what is going on with so many people. I also believe that all the ADHD and autism is somehow related. Sometimes I feel like I need to crawl out of my skin – how would a child react to that feeling?

  4. Sheridan Collins  September 28, 2010 at 1:03 am

    A couple of days ago I found information regarding Agent Orange, Blue and White also other chemicals being developed and tested on Kauai where I grew up. One of the test sites was on a mountain above where we lived. This area drained into the Wailua River which ran right past our house. This is literally the wettest spot on earth. It never stops raining up there. There was a canal that ran behind the house to the river. I swam and fished there – paddling my board down to the river often. Another site was weirdly identified with a name I have never heard of. That would be where they consider the worst offenses to have occurred. The actual lab appears to have been very close to the high school I attended on and off. Another aerial testing area was on the north side of the island where I rode horses often. Exact locations don’t matter much. The trade winds don’t stop and drift could be a hundred miles.

    I have been extremely ill since high school with severe allergic reactions to solvents, petrochemicals, pesticides, perfume, etc. Also anaphalactic mold reactions with major facial swelling. I have been diagnosed with Chronic Fatigue, osteo arthritis, Fibromyalgia and Environmental illness. THESE ARE NOT DISEASES. THESE ARE SYMPTOMS. I always knew something really bad had happened to me on Kauai, but I thought it was the dioxin that was burned in the cane fields before harvest. I have a sister who is 5 years younger than I am. She is also ill, but has never had the extreme illness I have had. She had a double mastectomy at about 40. She works for UofH which is right in the middle of this mess. I got a message from a woman in Hawaii today stating that UofH and the Navy is doing Agent Orange research again for possible use.

    Two of the employees at the lab died soon after they were exposed to the chemicals. I can only do so much research at once.

    The fact that you have pulled together all this information in one place makes me think you have experienced it yourself. For the past few years every time I relapse I get worse. The peripheral neuropathy is very bad now. I can barely touch the top of my head and at any moment I can lose my muscle strength. I am 59 and don’t imagine age will improve things.

    Despite all this I raised two children alone who both graduated from college, worked in bush Alaska, AZ, NM, CA and the Navajo Nation as a Senior Civil Construction Inspector. I went to college for many years, but all I really wanted to do was sit on a horse or a tractor. I worked on cattle ranches and hay farms. I did everything but cook (on principle). I am not the type to be dying to sit in from of a TV doing nothing. In fact I think sitting in front of an idiot box will be the death of me. Sometimes it is all I can do. I also lived for 3 years in Costa Rica because I wanted my daughters to learn Spanish well and something about other cultures. I don’t know how I did it all – I was sick as a dog most of the time, but was unwilling not to somehow have my very own kickass life.

    I still have my good cow horses. They are fat pets now, but they are my family in the isolation I live in. After years of illness and nontraditional work for a woman, I have managed not to really know anyone. It does not help that I cannot live near row crops or other agriculture or towns. Going into Walmart can put me horizontal for a month. I stay out here on the ranch to myself. Not what I imagined life to be, but if I could just get a little better I could ride in the country every day. That is my goal.

    I tried to go to the Department of Rehabilitation, but got such a run around and was so exhausted by them that I was in a major vehicle wreck – totaled my pickup. They authorized a woodworking program, then refused to tell me how to get my tools. It was horrible. The counselor told me what I have is a “mental thing” and I should be taking medication. I WANT TO SUE THEM. But my energy is so limited. I’d rather use it to brush a horse or dog. Now that I have the Kauai information on agent Orange, etc., maybe I will proceed.

    Anyone with any ideas can email me at [email protected]

    Good luck to everyone.
    Sheridan Collins
    New Mexico

  5. DSNurse  September 28, 2010 at 12:59 am

    If you are a gulf war veteran, family member, nondeployed, DOD, or contractor or ties we need to hear from you too.
    While I was at Salt Lake City OFFER conference about 8 gulf war vet family members raised their hands, unfortunately I did not ask them to gather with me so we could network so if you were there and one of them please email me [email protected]

    Also interested any researchers in Salt Lake City connected with VA interested in the subject of XMRV….if you were there please contact me.

    And interested in any of the CFS researchers that are civilians that would work with ill gulf war veterans—Please help and contact me at [email protected].
    If you are gulf war vet and want to be involved email me [email protected]
    Yes I am on facebook also Denise Nichols

  6. kathryn stephens  September 27, 2010 at 7:52 pm

    “…patient selection…’ Demand that any patient that has a diagnosis of any type of NeuroEndocrineImmune Disease (NEIDs) should be tested for XMRV/PMLVs. GWI, ME/CFS, FM, IBS, ALS, Atypical MS, Autism, and on and on ad nauseum.

    Until we band together, the DOD and CDC will be happy to divide us into psychological categories; this helps the insurance industry and the VA by negligence of the patient, dismissal of the patient, degradation of the patient and as with the “Yuppie Flu” label, belittling of the patient.

    The Cause in the link above is a HAPPENING! I hope you will come join us; we have added 60 members in just the past week! We are fighting for YOU and all of US, whatever our NEID. We have 1170 members now; YOU can tip the balance scale and make us an even formidable force for good for these patient populations.

    Thank you, Denise, for this concise compilation of the XMRV news; your dedication is truly worthy of Tom Hennessey’s comparision to our Florence Nightingale hero.

    • DSNurse  September 28, 2010 at 12:54 am

      Thank the CFS advocates Cort, Rich and all the many others. They compiled the info on XMRV abstracts from the international meeting this past month. I just did the introduction with my questions and why I keep digging!

      Yes we all need to help each other and get answers for our vets that were so sick but also the millions suffering from CFS that like us have sufferred.

      WE need networking and we need to have gulf war vets as a subset. WE need to know similarities and differences in testing and diagnostics and treatments.

      Denise
      DSNurse

  7. XMRV Positive Survey  September 27, 2010 at 1:42 pm

    Denise, your summary is excellent and shows how you understand the nuances of both the scientific and political issues concerning human gamma retroviral involvement in human disease. Reporting at this level must have been some undertaking. I appreciate your efforts.

    I wanted to know more about the discrepancy between Dr. Hanson’s abstract and her actual presentation, so I emailed her and asked if the interpretation of her results had changed from the time she submitted her abstract to when she presented at the workshop. She kindly clarified and gave me permission to share her response with others.

    “I referred to the virus as XMRV in the abstract because I didn’t feel I should rename it on the basis of finding gag sequenc…es more similar to polytropic viruses than xenotropic viruses. Remember that XMRV means xenotropic murine leukemia virus-RELATED virus. All of the MLV-related viruses found in humans fit this definition–they are related to xenotropic ML viruses, even if they are even closer to polytropic viruses. The difference is semantic at this point. No one yet has a complete sequence of any of the variant viruses that were detected by Lo et al in their publication and by other groups. We don’t yet know actually how different these will be from the full-length XMRV sequences presently available in the database—however, in general all the MLV-related gag sequences found in humans so far are about 95% (or more) identical to the Urisman et al and Lombardi et al gag sequences.”

  8. Anon in the UK  September 27, 2010 at 12:40 pm

    I have ME/CFS, and from my point of view, the only patient group that has been treated worse than us has been the guys with GWS. When someone has served their country, you’d think the government would do everything they can in return, but that hasn’t happened.

  9. Sharon Stapleton  September 27, 2010 at 11:39 am

    I was a civilian working at a defense contracting company during the Gulf War. I was down at the Pentagon often during that time. The company also had Guardsmen coming/going from the Gulf.

    I got very sick with ME/CFS about a year or so after the war ended. When I went to the company’s Nurse MBA to get information, etc. she was useless and told me that “they” thought people like me were just depressed. By accident, this woman sent an email to me and about 15 names on it about a doctor who dealt with CFS. I also knew another 4 people who had all my symptoms and were terribly sick. Those that got a diagnosis that was NOT CFS did get long-term disability while those of us with the diagnosis of CFS got nothing. Now, doing the math, from what little I knew there was at least 20 people at this commpany of under 1,000 people who had the symptoms of CFS all at the same time. That does not include those sick people who did not ask for help or LTD. To my way of thinking, this was a CFS/GWS cluster that was not documented or dealt with. We were all so terribly sick and our symptoms were pretty much like the GWS guys who were sick.,

    So, what is common to both the civilians and the GWS people? What contagion did we all share? Was there something in the vaccines given to our GWS sick that was so contagious that it made it across to us civilians who were around the GWS? What about the families of the Gulf War sick? Many of them show much the same symptoms too. And THIS is why we all must gather together and force the military and the Federal government to do far more research on this newly discovered Retrovirus to see if it does in fact play a role – directly or indirectly – in our diseases.

    Finally, since this is a new retrovirus, it is important that our government does do heavy research to find out what it may cause and its implications. That would be basic science, basic medical research – and it must be done.

    IF it turns out that the civilians and our GWS Vets do have this retrovirus in their blood/DNA then we need to know that so that treatments can be found to get rid of those viruses and maybe return us all to something more normal.
    I have had enough of being sick. My husband got sick with CFS 10 years after I did and has been couch-bound for 6 years. He was a senior DoD (SES-5) employee and was forced into retirement since he could no longer work. He was and continues to be terribly sick. I do think whatever we have is contagious and has a long incubation period. If you look at the numbers of spouses/parents-children who are sick with CFS in a family the numbers are just too high for it to be coincidence.

    Beat on the military and VA and the Federal health orgs to get us more funding for this newly discovered Retrovirus. They OWE our VETS this. They OWE the rest of us and the world far more research for this virus family. So open your mouths and complain.

    Hit http://www.causes.com/causes/511536?m=f042604e read, join, donate if possible, and be a part of getting your own cure since no one else is doing it for you. We are getting a 1/2 page AD in the Washington Post that will draw major attention to this new virus and the need for far more funding and research. Help us. Use your voice to get what we ALL need NOW.

  10. Thomas Hennessy  September 27, 2010 at 12:03 am

    HI Denise, i can vouch for your bonafides in this mess. I remember meeting you at some of the earliest Gulf War Syndrome hearings on Capitol Hill. I believe that i was the first person anywhere to link sick gulf war veterans with the so called “Chronic fatigue syndrome” on CNN’s Larry King Live on May 4th, 1991, just months after veterans started coming home sick. i feel that they are layers of toxic insults on top of patients with both genetic and psychological predispositions. Some of our best and brightest got SOO sick after their service in the gulf . they way they have been treated since they came home is a crime similar to the way Vietnam Vets were ignored for decades when they came home with illnesses caused by agent orange exposure, and nasty vaccines with toxic adjuvants in them, and the stress of being in the jungle for years at a time. We need to put returning Vets at the FRONT of the line for care and reimbursement, not the back. Three cheers and all thanks to Denise to stay on the front lines in fighting for fair treatment. Denise is the personification of our heroine, Florence Nightingale. we honor her memory every year with “May 12th International ME/CFS Awareness Day”. check out our site at http://www.rescindinc.org. thank you DENISE NICHOLS! sincerely, Tom Hennessy, President, RESCIND, Inc.

  11. shelley carlson  September 26, 2010 at 11:39 pm

    This has been treated with the same callous neglect PWC’s have been shown, many by their own doctors. I’ve noticed not many doctors keep up with medicine, other than their own specialty arenas. I’ve also noticed many doctors not only treat us with neglect, but do it with great disdain for our unfortunate dependence on “quacks” who feed our need to be sick. Quacks like those at the WPI.

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